Power Wheel Chair - When to get

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KarstBoy

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The advice I've seen on this site concerning the purchase of a mobility van is to wait until you actually have a wheelchair before purchasing a van so that you can make sure the vehicle will accommodate your specific wheelchair. My 65 yo wife, who has bulbar onset ALS (diagnosed April this year) is still able to walk despite one foot/leg that is becoming progressively weaker. We have not purchased a wheelchair yet but at some point, possibly by the end of the year or early next, a power wheel chair may be needed.

How far ahead of actual need did you purchase a power wheel chair? I'm concerned about this because of the long time lags involved in both wheelchair and van purchase.
 
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Bestfriends14

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Hi there,

We purchased a van approximately 9 months ahead of the actual power wheelchair purchase. We did this because we bought a used wheelchair van and where we are, a city of 1.7 million, a used van is very hard to come by. We knew the van was going to be expensive and seeing as it was temporary, we did not want to spend 50k for a brand new one, hence the second hand choice. His chair fit no problem in the van.

As for the wheelchair itself, we purchased that about a year before he could no longer walk. My husband used it for going outside as it was so much easier than a walker and trying to transfer on and off a scooter.

Hope this helps a bit.
 

swalker

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I am an advocate for getting a wheelchair early.

It takes a long time to get a wheelchair approved, ordered, fitted, and delivered. In my case, it was 4 months, which seems about typical. If you think a wheelchair might be needed by the end of the year, start NOW!

The last time I went through insurance to get a wheelchair (5 years after getting my first wheelchair), it took 9 months to get to a point that they could tell me what my out of pocket costs would likely be. Those costs were so high that I bought a used wheelchair instead, which took less than 2 weeks to find and buy (I got a bit lucky on that).

The time to get a wheelchair is not when she can no longer walk on her own. Get a wheelchair while she still has good mobility. Doing so will enable her to save her strength for other things. It will allow her to do things she cannot do now, such as going for long walks. It will also make fine-tuning the fit a lot easier if she can readily get out of the wheelchair so you can make adjustments to it.

We also bought a used wheelchair vehicle. I started the search well before we had the wheelchair. I looked for about 6 months to find a reasonably-priced van that suited our needs. We had the wheelchair before we bought that van and were able to confirm the wheelchair would fit into it. I use large wheelchairs that will not fit in a lot of vans (Permobil C500, Permobil F5, Magic Mobility X4).

Steve
 

Fusia

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I totally agree with those above. My wheelchair took about three months to get, it was delivered almost one year ago. Until recently, I mainly used it for long hikes and walks outside, but could take shorter walks using the Rollator. Now, I still mostly use the Rollator indoors, but use the PWC anytime I leave the house. I also bought a used accessible van (2015 Toyota Sienna) after the wheelchair was delivered, but I did not test it with my PWC before purchasing it, since it was halfway across the country. But, my Permobil F3 fits just fine - I can go forward up the ramp and turn directly into the front passenger spot without any problem. Unless the PALS is very tall or the PWC is unusually large, I would think that most accessible vans would work fine. If the PALS can still transfer and wants to sit in the regular car seat, just don't remove the passenger seat and load the PWC in the area behind the front seats after she has transferred.
 

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Yep... the sooner, the better. You will want to have it well before it is needed... and especially before you reach that point of being susceptible to falling. You really don't want your PALS to fall, as one (or both) of you can get hurt. If your wife's ALS is slow progressing, she will be eligible for a new chair after 5 years through Medicare.

My best...

Jim
 

Nikki J

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There is a risk though of the wheelchair not working in a particular van my sister who was petite purchased a van that had belonged to a male PALS. In spite of that her chair didn’t fit and she had to get another.
 

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If you haven't already, you should start the process now
I would talk to your doctor first and then get the rest of the team to kick things off.
As long as everybody communicates, it should be a pretty painless process through Medicare.
 

JimInVA

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What Nikki says, holds has merit. We got Darcey's PWC when she was barely able to stand. We had a regular Honda Odyssey and then had to figure out how to get her and the PWC from home and into work. I would position the PWC near the open passenger door and bear hug her out of the chair and into the front passenger seat. Hmmm... I wonder if all that bear hug transferring is why I'm 6'1" now and not 6'3". Sorry... I digress.

I then opened the back of the van and pulled out two portable ramps and positioned them so they were properly spaced. I used the chair controls that were on the back of the chair and guided the chair up the ramp (under its own power). Once it reached the point wherein that back of the chair would not go in, I'd use the controller to lay the back down until it cleared. I'd then complete the process of driving the PWC fully into the back. [Note: I believe that I'd removed the middle row seats in the 2003 van to make room.] The reverse process happened once we got to work. It was a brutal process and not one that I'd recommend... but it was what we had to do with what we had to make things work. CALS do those kinds of things! :)

Darcey's chair was about as big as they come... so I was worried that it might not fit in the type of BraunAbility van that I was looking to purchase. I really did need something easier than what I described, above. I knew that I wanted another Odyssey (much more than the Dodge, Chrysler or Toyota van options) as my previous Odyssey was such a treat to drive. So I went back to the mobility dealer and priced out a new 2014 Honda Odyssey Van with the BraunAbility side entrance. I paled at the just over $76,000 price tag for a new one... but what choice did I have?

Before I would spend that kind of money, I wanted to be sure that Darcey's big PWC (a Quantum Edge Q6) would actually fit. So on that weekend, I began a search to see if I could find one... SOMEWHERE... that I could take Darcey to and try. Saturday internet searches presented no solutions... but I persisted and continued to search on Sunday. Suddenly, I got a hit. A used van dealer, 45 minutes away, had the exact van (down to the color and options) that I was looking to buy new. The only difference is that it was a 2013 and not a 2014. I sent off an email asking if I could come by on Monday and look at it. They replied moments later promising it would be available for us at 10AM that next day.

Arriving, we saw it immediately. We were both so excited and hopeful! The dealership treated us so nicely and showed us how the ramp system worked. They removed the front passenger seat and rolled it out of the van so I could actually put Darcey up in the front passenger area. And then the big moment came. Time to drive her in.

My first attempt began with trying to drive her forward into it. But it just didn't feel right as I was below her and couldn't see what I was driving her into. So I backed her down, turned her around and backed her up the ramp. This proved much more comfortable and controllable. As her head neared the top of the side opening, I could see that she was going to hit her head. No problem! A quick tilt of the chair back and she was low enough to complete that first journey into the van. Darcey was 5'8".

Knowing that Darcey would fit in this type of van was a HUGE relief! And, as long as we were there, it seemed prudent to at least ask about the van's history and price. It was purchased for a gentleman who had been retired military and provided by the VA. As this was a VA appointed van, it had a redundant battery system installed for the ramp system. It had only been used for a very short time and had 440 miles on it. That was less than 2 tanks of gas!! It was basically brand new! They wanted $49,000 for the same van that was contemplating spending over $76,000 on. I wrote him a $1,000 check as a deposit before he even had the paperwork done!

This van opened up new avenues of adventure for us. Going to and from work was a thousand times easier. Doctor appointments, grocery runs, trips to see our favorite artist perform live a full state away, vacations at the beach... all were easily done, now. It was a remarkable tool. Darcey's last trip in it was to vote, in person, in the last Presidential Election... something that she swore she would stay alive for. She was gone less than a month later.

I think you get the PWC when you need it... and before your PALS is prone to falling. You must avoid falls at all costs. Before you commit to it, find out what brand and model it is. Once you know that, come here and ask what it will fit in. It is likely that one of us, here, can give you that answer. Many cities have public or private transit that can come pick you up in a PWC and take you where you need to go. It can help bridge that time between getting a PWC and getting a van.

I hope that our story helps you recognize that you have options. That knowledge should help with the decisions you two will need to make for yourselves.

My best...

Jim
 

jonico

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Excellent advice from everybody above. To Nikki's point, it is optimal to get the wheelchair and van at the same time (or van first) if you can pull it off. We were lucky that the mobility vehicle that we bought came with a Permobil wheelchair which ended up being my wife's wheelchair for the duration. Jon
 

KarstBoy

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They wanted $49,000 for the same van that was contemplating spending over $76,000 on. I wrote him a $1,000 check as a deposit before he even had the paperwork done!

Jim, Thanks for the tale of your Honda van purchase. Hope I can get that lucky. 440 miles on the odometer and you got $25k off,... wow!... quite a deal.

Like you, I like Hondas. I've owned 3 and they have been dead reliable. On the other hand, the experience I've had with the 3 Chrysler products I've owned over the years has not been the best.
 
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KarstBoy

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We were lucky that the mobility vehicle that we bought came with a Permobil wheelchair which ended up being my wife's wheelchair for the duration. Jon

That's what you call an ideal situation!
 

KarstBoy

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If you haven't already, you should start the process now
I would talk to your doctor first and then get the rest of the team to kick things off.
As long as everybody communicates, it should be a pretty painless process through Medicare.

Very fortunately for us, my wife is a veteran. Can't say enough good about the VA so far. They have gone out of their way to help us get started on this journey.
 

JimInVA

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@KarstBoy - I'm not certain... but I think the VA will pay for the entire conversion van. I hope that proves true for you.

Jim
 

KarstBoy

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Until recently, I mainly used it for long hikes and walks outside, but could take shorter walks using the Rollator.

I wish my wife could use a rollator but her onset is all upper body. In addition to losing her voice and a bit of function in her right leg, her right arm/hand is almost useless so a rollator is out.

Now, I still mostly use the Rollator indoors, but use the PWC anytime I leave the house. I also bought a used accessible van (2015 Toyota Sienna) after the wheelchair was delivered, but I did not test it with my PWC before purchasing it, since it was halfway across the country. But, my Permobil F3 fits just fine - I can go forward up the ramp and turn directly into the front passenger spot without any problem.

That's good news Fusia as the Toyota Sienna or the Honda Odyssey is on my radar as is the Permobil F3.
 

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If you haven't already done so, ask if your local ALS or MDA association loan closet has a PWC they can loan out until you get your own. My husband used a loaner for a few months until his insurance covered chair was fitted and delivered. The ALS Association also had a transport program that we used a few times before we got our van. They came right to the house and took us right to the door of our destination. Reservations did need to be made in advance, but it was a short term solution for us.

As for the van, we had issues getting my husband and his PWC into most (minivan) conversions. He was 6'2" and had a Permobil F3. The manager of the local MobilityWorks brought several (used) vans right to our house so we could try them. A Dodge Grand Caravan with a Braun XT conversion was the only combination that worked. We rented one for a weekend before we were able to purchase one. Ours had captains chairs in the front that could roll out. Most times, he chose to sit up front in the passenger position. As things progressed, he chose to sit in the back where he could stretch out a little more. Towards the end, he used a head controller and found it difficult to maneuver in and out. At that point, I got the joystick moved to the back and I would back him into position. The van did fit into our garage. We had a 2 car garage with a ramp on one side. That allowed him to get in and out of the van in the garage, rather than having to go outside to load up. Gamechanger for the cold winter months!

I do admit, the thing was a beast. Not my favorite. BUT, it was not about me, but my husband being able to get out again. We had it for around 3 years before he passed. When he did, MobilityWorks bought it back. I could probably have sold it for more, but I just wanted it gone.
 
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